Please sponsor this wonderful lady as she runs in memory of her daughter:
http://www.justgiving.com/Billiegirl
Friday, 6 July 2012
Sunday, 1 July 2012
Advice for parents of newly diagnosed children
This is advice for parents of newly diagnosed children. These are some things that I have learned:
Seek out some support for yourself where you can be completely honest about how you feel: you will hold back your fears, around your child (of course), but possibly around relatives too. If you want to question, and deal with what-ifs (if you are that kind of person, some of us are, some aren't) then you don't need to be told not to think about that, or to stay positive. It can help to have somebody who will listen to your fears. Voicing them will not make them come true. But it might help your head. We were given a CLIC Sargent social worker, who has been wonderful support for us. But, a counsellor could also be helpful. See your doctor. Or, find a spiritual ear. All hospitals have non-denominational chaplains to talk to.
In fact, see your doctor anyway. You will need that kind of support. As time passes, you may need sick notes, or help with forms, let alone any medication that you might need. I'm not saying that this is a given, but please remember pills (sleeping/mood) are there if you do need them.
Keep a notebook. You will get told different things by different people. For me, it was the most difficult and frustrating part of being in hospital. I was sharing care with her dad, and each time I'd come back in, something different had been said. For example, a consultant would say, she needs a transfusion, then Sister would come along and say they couldn't do it that night, so they'd wait, then she would order blood tests and say she didn't think she needed one (even though counts were same and consultant wanted it doing), then consultant would be back two days later wanting to know why it hadn't been done... Believe me when I say, I fought and argued, but you get sick of being looked at like the difficult parent. And I could have taken it further, it is easy to think back over the things that happened and say, I should have complained (the example I gave is mild), but you feel beholden to these people, you essentially have to live there, and the next thing always comes along before you get a chance. I should have written everything down, so I could clearly argue my case should I have chosen to. It would have given me more control in a situation where I felt powerless; it would have given me a record for when I wasn't there (if dad had done it too), and it would have been helpful to have my own notes to look back on as treatment progressed.
If you do need somebody to speak up for you in hospital, contact PALS. Every hospital should have this patient liason service. They are there to act as a mediator if you feel staff aren't listening to you.
Get ear plugs. I wish I had. Hospital bays are very noisy places at night.
Take some creature comforts for you: your own towel, perhaps your own pillow and blanket. We bought a mattress topper from Argos to cover the fold-out bed. It made it a little better.
You should be entitled to DLA. Get a form, get somebody to help you fill it in. This will enable you to apply for a blue disk later if you need to. It is extra money, it is disability benefit. Forget how you feel about claiming benefit, if you are against it, as you will need it. Hospital stays get expensive. You will miss work, and if, like mine, your child has leukaemia, treatment lasts for a long, long time. People's sympathy does run out, and days off become unpaid quite rapidly. Apply for everything you can get.
CLIC Sargent also have volunteers. When you get home, if you need someone to stay with your child so you can go to an appointment/the shops/just have a rest, then they have CRB checked volunteers who can do that for you.
Obviously, you will tell your employer, but tell your union too. If you aren't in one, and can be, join one. You might need their help in the coming months.
If your child has leukaemia, which is a critical illness that lasts for longer than 12 months, you are covered under the disability act as their carer. This is important to know for entitlement at work. You are entitled to 18 weeks off, unpaid, and this can be taken as daily increments, although you are supposed to give 21 days' notice. But, you are also allowed to take 'emergency' dependent's leave. A reasonable amount. What that means is unclear, but you do have some rights and protection from the law. I hope your employer is compassionate and stays compassionate, but in case they don't, you do have some support. If you don't have union, try charities or your social worker. And remember you might have legal advice through your home insurance.
This sounds quite serious in places, but these are all things that I have worried about or encountered over the past 18 months. If I think of more, I will update.
Seek out some support for yourself where you can be completely honest about how you feel: you will hold back your fears, around your child (of course), but possibly around relatives too. If you want to question, and deal with what-ifs (if you are that kind of person, some of us are, some aren't) then you don't need to be told not to think about that, or to stay positive. It can help to have somebody who will listen to your fears. Voicing them will not make them come true. But it might help your head. We were given a CLIC Sargent social worker, who has been wonderful support for us. But, a counsellor could also be helpful. See your doctor. Or, find a spiritual ear. All hospitals have non-denominational chaplains to talk to.
In fact, see your doctor anyway. You will need that kind of support. As time passes, you may need sick notes, or help with forms, let alone any medication that you might need. I'm not saying that this is a given, but please remember pills (sleeping/mood) are there if you do need them.
For the stay in hospital you need plenty of water to drink and hand cream. I dried out so much from alcohol hand gel that my hands got covered in a big rash which cracked and bled. Not much fun. Also, try and get out for some air at least once a day. It is scary to leave - especially if you are waiting for doctors/treatment/tests/test results - but the nurses are there, and possibly other staff - like social workers, play workers, etc - so try and get yourself a break.
Keep a notebook. You will get told different things by different people. For me, it was the most difficult and frustrating part of being in hospital. I was sharing care with her dad, and each time I'd come back in, something different had been said. For example, a consultant would say, she needs a transfusion, then Sister would come along and say they couldn't do it that night, so they'd wait, then she would order blood tests and say she didn't think she needed one (even though counts were same and consultant wanted it doing), then consultant would be back two days later wanting to know why it hadn't been done... Believe me when I say, I fought and argued, but you get sick of being looked at like the difficult parent. And I could have taken it further, it is easy to think back over the things that happened and say, I should have complained (the example I gave is mild), but you feel beholden to these people, you essentially have to live there, and the next thing always comes along before you get a chance. I should have written everything down, so I could clearly argue my case should I have chosen to. It would have given me more control in a situation where I felt powerless; it would have given me a record for when I wasn't there (if dad had done it too), and it would have been helpful to have my own notes to look back on as treatment progressed.
If you do need somebody to speak up for you in hospital, contact PALS. Every hospital should have this patient liason service. They are there to act as a mediator if you feel staff aren't listening to you.
Get ear plugs. I wish I had. Hospital bays are very noisy places at night.
Take some creature comforts for you: your own towel, perhaps your own pillow and blanket. We bought a mattress topper from Argos to cover the fold-out bed. It made it a little better.
You should be entitled to DLA. Get a form, get somebody to help you fill it in. This will enable you to apply for a blue disk later if you need to. It is extra money, it is disability benefit. Forget how you feel about claiming benefit, if you are against it, as you will need it. Hospital stays get expensive. You will miss work, and if, like mine, your child has leukaemia, treatment lasts for a long, long time. People's sympathy does run out, and days off become unpaid quite rapidly. Apply for everything you can get.
Charities can also give you some financial support. They raise money to help people like us: it is the reason they are there. If you need some more help, ask them.
CLIC Sargent also have volunteers. When you get home, if you need someone to stay with your child so you can go to an appointment/the shops/just have a rest, then they have CRB checked volunteers who can do that for you.
Obviously, you will tell your employer, but tell your union too. If you aren't in one, and can be, join one. You might need their help in the coming months.
If your child has leukaemia, which is a critical illness that lasts for longer than 12 months, you are covered under the disability act as their carer. This is important to know for entitlement at work. You are entitled to 18 weeks off, unpaid, and this can be taken as daily increments, although you are supposed to give 21 days' notice. But, you are also allowed to take 'emergency' dependent's leave. A reasonable amount. What that means is unclear, but you do have some rights and protection from the law. I hope your employer is compassionate and stays compassionate, but in case they don't, you do have some support. If you don't have union, try charities or your social worker. And remember you might have legal advice through your home insurance.
This sounds quite serious in places, but these are all things that I have worried about or encountered over the past 18 months. If I think of more, I will update.
Wednesday, 20 June 2012
Side effects?
Daughter has become swollen. They've put her chemo up to 80% and her counts have plummeted. We are at home waiting the results of lots of tests. They are looking at her thyroid, her kidneys and tomorrow she will have an ultrasound of her liver. She had a scheduled MRI at the start of the week to test the state of the iron overload she has in her blood - whether this is affecting her organs.
They have to have the medicine, but the medicine is dangerous.
I keep looking around me and wondering how the heck this is now our life.
They have to have the medicine, but the medicine is dangerous.
I keep looking around me and wondering how the heck this is now our life.
Monday, 11 June 2012
Update
I've not posted for a bit because it is difficult to at the moment.
Daughter's chemo was reduced because of repeat infections. She's been better in herself, but her counts are now higher than doctors would like, so dose will be going back up. It is a roller coaster of numbers; a fine balancing act trying to get them in the correct range.
I can't talk about work now. I have to go; I wish I could afford to stay at home. The guilt is difficult and the pressure is starting to make me ill. I do wonder where I will be when we finish treatment in a year.
It is a long, hard slog, the treatment of leukaemia. It is always there, being a darkness in the corner. However normal I can pretend life is, it is only ever for a minute.
They say we have the worst of times and the best of times. I hope this is her worst of times. She deserves to live a charmed life from this point onwards, after all she has endured.
Sending love and best wishes to you all.
Daughter's chemo was reduced because of repeat infections. She's been better in herself, but her counts are now higher than doctors would like, so dose will be going back up. It is a roller coaster of numbers; a fine balancing act trying to get them in the correct range.
I can't talk about work now. I have to go; I wish I could afford to stay at home. The guilt is difficult and the pressure is starting to make me ill. I do wonder where I will be when we finish treatment in a year.
It is a long, hard slog, the treatment of leukaemia. It is always there, being a darkness in the corner. However normal I can pretend life is, it is only ever for a minute.
They say we have the worst of times and the best of times. I hope this is her worst of times. She deserves to live a charmed life from this point onwards, after all she has endured.
Sending love and best wishes to you all.
Saturday, 5 May 2012
The internet empowers daughter
Much of this blog has been one point of misery and despair after the next. Unfortunately, this has been our journey. It does not mean that another child will have the amount of infection/hospital stays that daughter has had.
Anyway, one thing that has been a positive side of the last year is the internet.
I am incredibly thankful that, throughout huge periods of isolation, daughter has essentially become something of an internet celebrity in her own right.
She plays on an much-advertised, international game. She has been on the leader-board for months. Though, in fairness, she does have a lot of hours spare! I remember reading a book about excellence being cultivated by so many thousand hours of time spent honing a certain pursuit. She is very, very excellent at it!
I will give you an example: she created a profile page on there 3 days ago, and so far it has had 93,000 page views. That's a bigger circulation than my local paper... although, her profile is probably more interesting (sorry paper ;-) ).
She has a blog (89 followers, 13,000 page views) and she and I have started to write some short stories for teenagers as her peers seem to like that sort of thing, and we both enjoy writing. (I will admit, she is much better than me!)
If you want to read, shameless plug, it is called 'dark days and dreadful nights':
http://darkdaysdreadfulnights.blogspot.co.uk/
These figures I am citing may seem like small fish in the international waters of the internet. I am pretty impressed by them though.
So, take a girl with cancer and give her a laptop. She now has people fighting to be her friend; she has gained confidence and self esteem; she has hardened her shell too when she gets the occasional nasty comment or situation. She is far from stupid: she knows the rules of internet safety. This experience has allowed her to develop her own likes and dislikes, to formulate her own moral code (she has written blog posts slamming evidence of discrimination against women, racism), and to give her back her self-esteem after what has been a horrible time for her.
I am also proud of the comments she gets from peers, who tell her she is "kind and approachable" unlike other leader board figures. (Ah, the politics of a virtual world.)
For once then, might I be a parent who is happy her daughter spends hours on the internet? I am thankful for it. It has given her a social life that real life has tried to take away from her.
It has empowered her when she feels most powerless.
Anyway, one thing that has been a positive side of the last year is the internet.
I am incredibly thankful that, throughout huge periods of isolation, daughter has essentially become something of an internet celebrity in her own right.
She plays on an much-advertised, international game. She has been on the leader-board for months. Though, in fairness, she does have a lot of hours spare! I remember reading a book about excellence being cultivated by so many thousand hours of time spent honing a certain pursuit. She is very, very excellent at it!
I will give you an example: she created a profile page on there 3 days ago, and so far it has had 93,000 page views. That's a bigger circulation than my local paper... although, her profile is probably more interesting (sorry paper ;-) ).
She has a blog (89 followers, 13,000 page views) and she and I have started to write some short stories for teenagers as her peers seem to like that sort of thing, and we both enjoy writing. (I will admit, she is much better than me!)
If you want to read, shameless plug, it is called 'dark days and dreadful nights':
http://darkdaysdreadfulnights.blogspot.co.uk/
These figures I am citing may seem like small fish in the international waters of the internet. I am pretty impressed by them though.
So, take a girl with cancer and give her a laptop. She now has people fighting to be her friend; she has gained confidence and self esteem; she has hardened her shell too when she gets the occasional nasty comment or situation. She is far from stupid: she knows the rules of internet safety. This experience has allowed her to develop her own likes and dislikes, to formulate her own moral code (she has written blog posts slamming evidence of discrimination against women, racism), and to give her back her self-esteem after what has been a horrible time for her.
I am also proud of the comments she gets from peers, who tell her she is "kind and approachable" unlike other leader board figures. (Ah, the politics of a virtual world.)
For once then, might I be a parent who is happy her daughter spends hours on the internet? I am thankful for it. It has given her a social life that real life has tried to take away from her.
It has empowered her when she feels most powerless.
Wednesday, 2 May 2012
Sick, sick and more sick
I am off again today as I have tummy bug, thanks to daughter who picked it up at school yesterday.
We've been ticking along recently. Her counts are a bit higher, but they have dropped her chemo dose down. I'm not sure what this will mean for her leukaemia though.
We've booked a huge holiday to celebrate the end of treatment next year. We're taking kids to Disneyland, Florida, staying in Animal Kingdom Lodge. I was so excited when I booked it, although a touch daunted about finding the cash. We will be living on beans for the next 15 months! We wanted something to be excited about after what has been the most difficult couple of years ever for all of us.
On a sad note, we lost a little boy who we knew from clinic. I am so very sorry for his parents. he was a lovely, lively little chap and it once again reaffirmed how cruel this illness is. We've also heard of other children who have had bad news in terms of relapse and survival. :-(
It is difficult unless you are a cancer parent to understand the stress you go through being surrounded by this world. My life is a mixture of pretending to be normal (attempting to go to work, shopping, cooking, washing) juxtaposed with a stream of hospital stays, extreme worry and bad news.
I feel a little bit sick most of the time.
Except today, when, because of the bug, I feel a lot sick.
We've been ticking along recently. Her counts are a bit higher, but they have dropped her chemo dose down. I'm not sure what this will mean for her leukaemia though.
We've booked a huge holiday to celebrate the end of treatment next year. We're taking kids to Disneyland, Florida, staying in Animal Kingdom Lodge. I was so excited when I booked it, although a touch daunted about finding the cash. We will be living on beans for the next 15 months! We wanted something to be excited about after what has been the most difficult couple of years ever for all of us.
On a sad note, we lost a little boy who we knew from clinic. I am so very sorry for his parents. he was a lovely, lively little chap and it once again reaffirmed how cruel this illness is. We've also heard of other children who have had bad news in terms of relapse and survival. :-(
It is difficult unless you are a cancer parent to understand the stress you go through being surrounded by this world. My life is a mixture of pretending to be normal (attempting to go to work, shopping, cooking, washing) juxtaposed with a stream of hospital stays, extreme worry and bad news.
I feel a little bit sick most of the time.
Except today, when, because of the bug, I feel a lot sick.
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